Testimony by DJ Jaffe, to NYC Dept of Health and Mental HealthNov. 1, 2013
My name is DJ Jaffe. I am Executive Director of Mental Illness Policy Org.
NYC and State used to focus all their resources on people with serious mental illness, but both are engaged in massive mission-creep that now leaves the most
seriously ill to fend for themselves. Bullying is the newest cause celebre used
by NYC to justify ignoring serious mental illness[1].
The fact that bullying isn’t a mental illness matters not a whit when it comes
to spending money. Peer support-in spite of lack of evidence that it reduces
violence, arrest, homelessness, suicide and incarceration is flooded with money
while Kendra’s Law proven to help the most seriously ill is largely ignored.
NYC has largely abandoned efforts at symptom amelioration for
the most seriously ill and instead focuses on ‘recovery’ and ‘wellness’
services for those who are higher functioning. The mental health system, which
used to be a mental illness system, has offloaded the most seriously ill to the
shelters, prisons, jails and morgues. As a result Riker’s Island is now the
primary provider of services to the seriously ill in NYC. There is no known way
to prevent mental illness, but ‘prevention’ ranks high in the department’s
activities. “Early Identification” is the
new buzz word, when those identified can’t get treatment. Mission-creep and
ignoring the elephant in the room: untreated serious mental illness has become policy.
We would ask that NYC stop shunning the seriously mentally
ill, end mission creep and return to making serious mental illnesses like
schizophrenia and treatment resistant bipolar disorder a department priority.
Here is how NYC can help people with serious mental illness
Make Hospitalization
Easier and Longer
It is harder to get into Bellevue than it is Harvard. The
Catch-22 is anyone well enough to walk up and ask for care is generally not
sick enough to be admitted. This makes involuntary admission, becoming a danger
to self or others, the only sure path in. That puts patients, public and police
at risk. It’s also cruel. Once in, patients are discharged sicker and quicker.
Psychiatrists routinely declare sick patients well, bending to the pressure
coming down from the top. Forget about taking the time needed to diagnose a
patient, understand what treatments have been tried and succeeded or failed,
collect medical history, social history, do a medical workup, try various
medicines, and titrate them. Any doctor who tried to do that would likely be
fired. Those that shove them out are rewarded.
We are well aware that a lot of the pressure on local
hospitals comes from closing state hospitals. Inappropriately discharged
patients flood local hospitals before they are ultimately sent to jail. We urge
you to also use your bully pulpit to oppose closures of state hospitals and
tell the public the impact this will have on local hospitals and jails.
Require Hospital
Discharge Plans to be Verified and Valid
Patients are shoved out of hospitals with beautifully drawn
up paperwork that has little basis in fact. Because hospitals are theoretically
not allowed to discharge to shelters, they will ask the consumer where he or
she will live. They will respond “With my parents”. And so the paperwork goes. Whether the parent is alive, is able to
provide shelter, is willing to provide shelter is never asked. Whether that is
what led to hospitalization in the first place, is never questioned. Hiding
behind HIPPA, social workers will fail to inform the family member the patient
is in the hospital, being discharged, or what medications or follow up
appointments are needed. But the paperwork is beautiful.
Stop allowing hospitals
and community programs to discharge patients to the crack in the system.
Services like rehabilitation, medication maintenance,
support are rarely put in place upon discharge from hospitals other than to
give the patient a token and telling them to go to some already overcrowded
program that has no idea they are expecting someone or room for them. Programs
delight when seriously ill patients fail to show up—exercise their right to
refuse treatment—because that frees up a slot for a higher functioning person.
Programs have become experts at sending patients to the crack in the system.
Again, the paperwork is beautiful and the patient is no longer the hospital or
programs responsibility, come what will.
Give clubhouse
programs all the support you can
Programs like Fountain House deserve heightened support from
the department. Clubhouse programs willingly serve the most seriously mentally
ill and are less likely to abandon them the first time something goes wrong.
But because they don’t fit neatly into the department’s funding streams or
political orientation, these programs don’t receive the resources they need to
serve existing populations or expand to serve more.
Make Greater Use Of
AOT
Along with clubhouses, AOT is perhaps the best program New
York has to help the seriously mentally ill from a civil liberties, treatment,
cost and benefit perspective. It dramatically reduces incarceration,
hospitalization, homelessness, suicide, violence, and arrest. A 2013 study
reported on in the New York Times found in New York City net costs declined 50%
in the first year after assisted outpatient treatment began and an additional
13% in the second year[2].
Another study found 80% of those subjected to AOT said it helped them get well
and stay well. In spite of it’s success. NYC has only 1800 individuals enrolled
in Kendra’s Law[3]. The
number should be closer to 4000[4]. (See research attached)
To better support Kendra's Law, NYC should
- · Move AOT Program Coordinators back into the hospitals, rather than hiding them in a back office in Long Island City and preventing them from having patient interaction.
- · Evaluate all patients who are being discharged from city hospitals after involuntary admission –i.e. were already dangerous to self or others—to see if they could benefit from Kendra’s Law or other services, NYC makes a big deal of trying to identify people, but people with serious mental illness are easy to find. NYC just refuses to look in the right places.
- · Evaluate all patients with multiple episodes of psychosis who are being discharged from hospitals to see if they could benefit from Kendra’s Law or other services. NYC recently started a First Episode evaluation plan that will evaluate 2000 individuals. Half won’t need services and of the 50% remaining, only half will be helped by the intervention. This is a very low hit rate. A lot of effort and paperwork to find very few people. If the program instead looked at those who have had multiple hospitalizations, the hit rate would be much higher.
- · Evaluate all prisoners being discharged from city jails who received mental illness services while incarcerated
- · Put AOT outreach workers in shelters. Again, stop pretending you are investing in ‘early identification’ while refusing to station personnel where persons with serious mental illness actually are.
- · Set up a mechanism to accept and investigate reports of families about loved ones who need AOT services. NYC is great at claiming to be responsive to parents, but that doesn’t happen when they need services for loved ones.
- · Hire more AOT case managers, give them a lower case load, and provide the resources they need to do their jobs.
By ending mission-creep, NYC has enough money to reduce
arrest, homelessness, suicide and incarceration of persons with mental illness.
NYC doesn’t lack money, it lacks leadership.
Research from nine studies conducted over ten years on Kendra’s Law
Prepared by
Mental Illness Policy Org.
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Study
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Findings
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July 2013: The Cost of Assisted Outpatient
Treatment. Can it Save States Money? American Journal of Psychiatry
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In the New York City net costs declined 50% in the first year
after assisted outpatient treatment began and an additional 13% in the second
year. In non NYC counties, costs declined 62% in the first year and an
additional 27% in the second year. This was in spite of the fact that
Psychotropic drug costs increased during the first year after initiation of
assisted outpatient treatment, by 40% and 44% in the city and five-county
samples, respectively. The increased community based mental health costs were
more than offset by the reduction in inpatient and incarceration costs. Cost
declines associated with assisted outpatient treatment were about twice as
large as those seen for voluntary services.
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May 2011 Arrest Outcomes Associated With Outpatient
Commitment in New York State Bruce G. Link, et al. Ph.D. Psychiatric Services
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For those who received AOT, the odds of any arrest were 2.66
times greater (p<.01) and the odds of arrest for a violent offense 8.61
times greater (p<.05) before AOT than they were in the period during and
shortly after AOT. The group never receiving AOT had nearly double the odds
(1.91, p<.05) of arrest compared with the AOT group in the period during
and shortly after assignment."
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October 2010 Robbing Peter to Pay Paul: Did New York State's
Outpatient Commitment Program Crowd Out Voluntary Service Recipients? Jeffrey
Swanson, et al. Psychiatric Services
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In tandem with New York's AOT program, enhanced services
increased among involuntary recipients, whereas no corresponding increase was
initially seen for voluntary recipients. In the long run, however, overall
service capacity was increased, and the focus on enhanced services for AOT
participants appears to have led to greater access to enhanced services for
both voluntary and involuntary recipients.
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October 2010: Changes in Guideline-Recommended Medication
Possession After Implementing Kendra's Law in New York, Alisa B. Busch, M.D
Psychiatric Services
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In all three regions, for all three groups, the predicted
probability of an M(edication) P(ossesion) R(atio) ≥80% improved over time
(AOT improved by 31–40 percentage points, followed by enhanced services,
which improved by 15–22 points, and "neither treatment," improving
8–19 points). Some regional differences in MPR trajectories were observed.
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February 2010 Columbia University. Phelan, Sinkewicz,
Castille and Link. Effectiveness and Outcomes of Assisted Outpatient
Treatment in New York State Psychiatric Services, Vol 61. No 2
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Kendra's Law has
lowered risk of violent
behaviors, reduced thoughts about suicide and
enhanced capacity to function despite problems with mental illness. Patients given mandatory outpatient
treatment - who were more violent to begin with - were nevertheless four
times less likely than members of the control group to perpetrate serious
violence after undergoing treatment. Patients who underwent mandatory
treatment reported higher social
functioning and slightly less stigma, rebutting claims that mandatory
outpatient
care is a threat to self-esteem.
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June 2009 D Swartz, MS,
Swanson, JW, Steadman, HJ, Robbins, PC and Monahan J. New
York State Assisted Outpatient Treatment Program Evaluation. Duke University
School of Medicine, Durham, NC, June, 2009
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We find that New York State’s AOT Program
improves a range of important outcomes for its recipients, apparently without feared negative consequences
to recipients.
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March 2005 N.Y. State Office of Mental Health
“Kendra’s Law: Final Report on the Status of Assisted Outpatient Treatment. “
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Danger/Violence
·
55%
fewer recipients engaged in suicide attempts or physical harm to self
·
47%
fewer physically harmed others
·
46%
fewer damaged or destroyed property
·
43%
fewer threatened physical harm to others.
·
Overall,
the average decrease in harmful behaviors was 44%.
Consumer Outcomes
·
74%
fewer participants experienced homelessness
·
77%
fewer experienced psychiatric hospitalization
·
On
average, AOT recipients' length of hospitalization was reduced 56% from
pre-AOT levels.
·
83%
fewer experienced arrest
·
87%
fewer experienced incarceration.
·
49%
fewer abused alcohol
·
48%
fewer abused drugs
·
Individuals
in Kendra's Law were also more likely to regularly participate in services
and take prescribed medication.
·
The
number of individuals exhibiting good adherence to medication increased by
51%.
·
The
number of individuals exhibiting good service engagement increased by 103%.
Consumer
Perceptions
·
75%
reported that AOT helped them gain control over their lives
·
81%
said AOT helped them get and stay well
·
90%
said AOT made them more likely to keep appointments and take medication.
·
87%
of participants interviewed said they were confident in their case manager's
ability to help them
·
88%
said they and their case manager agreed on what is important for them to work
on.
Effect on mental illness
system
·
Improved
Access to Services. AOT has been instrumental in
increasing accountability at all system levels regarding delivery of services
to high need individuals. Community awareness of AOT has resulted in
increased outreach to individuals who had previously presented engagement
challenges to mental health service providers.
·
Improved
Treatment Plan Development, Discharge Planning, and Coordination of Service
Planning. Processes and structures developed for AOT have
resulted in improvements to treatment plans that more appropriately match the
needs of individuals who have had difficulties using mental health services
in the past.
·
Improved
Collaboration between Mental Health and Court Systems.
As AOT processes have matured, professionals from the two systems have
improved their working relationships, resulting in greater efficiencies, and
ultimately, the conservation of judicial, clinical, and administrative
resources.
o
There is now an organized process
to prioritize and monitor individuals with the greatest need;
o
AOT ensures greater access to
services for individuals whom providers have previously been reluctant to
serve;
o
Increased collaboration between
inpatient and community-based mental health providers.
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1999 NYC Dept. of Mental Health, Mental
Retardation and Alcoholism Services. H. Telson, R. Glickstein, M. Trujillo,
Report of the Bellevue Hospital Center Outpatient Commitment Pilot
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• Outpatient
commitment orders often assist patients in complying with outpatient
treatment.
• Outpatient
commitment orders are clinically helpful in addressing a number of
manifestations of serious and persistent mental illness.
• Approximately
20% of patients do, upon initial screening, express hesitation and
opposition regarding the prospect of a court order. After discharge with a
court order, the majority of patients express no reservations or complaints
about the orders.
• Providers
of both transitional and permanent housing generally report that outpatient
commitment help clients abide by the rules of the residence. More
importantly, they often indicate that the court order helps clients to take
medication and accept psychiatric services.
• Housing
providers state that they value the leverage provided by the order and the
access to the hospital it offers.
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1998 Policy
Research Associates, Inc. Research study of the New York City involuntary
outpatient commitment pilot program.
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• Individuals who
received court ordered treatment in addition to enhanced community services
spent 57 percent less time in psychiatric hospitals than individuals who
received only enhanced services.
• Individuals who
had both court ordered treatment and enhanced services spent only six weeks
in the hospital, compared to 14 weeks for those who did not receive court
orders.
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